Brain tumours and mental health

Hi Charlotte

It must be incredibly hard to "try and act strong" so that people don't ask you what's wrong and that in itself must take a heavy toll on your mental health. I don't know what the answer is as I found the best way of coping was to tell people if they asked but I recognise that we are all different and have different ways of coping.

There is a group here specifically for people with an incurable diagnosis which has lots of supportive members who will totally understand the mental stress having an incurable diagnosis creates. The group is called living with incurable cancer and if you'd like to join it clicking on the link I've created will take you straight there.

If you think that talking to someone about how you feel would help then I can recommend the Macmillan Support Line. It's free to call them on 0808 808 0000 and someone is available every day between 8am and 8pm.

x

Hello Charlotte,

Im sorry to hear about your diagnosis. My husband has been dealing with a brain tumour for 13 years. We all find the whole process extremely challenging. He has had 2 surgeries, chemo and radiotherapy and is due more surgery in the next few months. We all find it difficult and have to literally battle through the day right now. He finds it hard pretending hes fine, and every time he goes into work he is asked if theres any more news and how he is. He was 28 when he diagnosed. His prognosis was 5 years (we re now 13 years later) and hes absolute symptom free which the annoying thing. A routine scan picked it up. We again, cant talk to people as everyone irritates me right now. We re both very angry that this is happening, so I have no advice other than to let you know that you are not alone. Its so hard and my heart goes out to you. My husband shaved all his hair off, as a lady it must be very upsetting to see it coming out in places. My husbands hair did grow back very quickly and evenly if thats any comfort to you after his treatment.

I hope that you continue finding your treatment with minimal symptoms. Lots of love xx

Hi 

I completely understand about the symptom free situation as I am the same. The only positive I can think on that is as they are treating it before I had symptoms then it could mean that the prognosis is longer than if I had symptoms. The doctor isn’t sure of prognosis anyway. She said she had 2 patients with comparable circumstances and 1 is 8 years in and well, the other is 5 years in, and isn’t exactly well but she’s still here. 

with work it has helped telling one person and then she told everyone else not to bring anything up unless I did which has helped and I’m definitely less irritated at everything this way. It also helps that she can keep HR updated so I don’t need to worry about that either.

it does help knowing that others are going through the same 

I hope your husband’s surgery goes well xx